From Regional Patient Advocate Jørn Schultz-Boysen
Following the 2022 HAEi Global Leadership Workshop, there has been a lot of dialogue around many of the items and offerings that were presented in Frankfurt, Germany. Not least around HAE TrackR, the app that enables patients to take control of their HAE by registering acute and prophylactic treatments, HAEi Connect, the member database that is offered to the Member Organizations, and HAE Companion, the pocket-size travel partner offered as an app. It has been fantastic to talk about these and other offerings and how they can benefit the Member Organizations as well as the patients and caregivers in the different countries.
We are still working on putting together the Regional Medical Advisory Panel. We have several participants confirmed, and they are already feeding in very valuable information and ideas. Other countries have not yet been able to appoint a member of the panel. We are looking forward to continuing the dialogue with the panel to benefit even more from the collaboration.
Similarly, feedback from the Regional Advisory Groups has also come in from many of the countries in the region. This will enable us to benefit from the experience of the local organizations and to use the ideas in the tools and services provided by HAEi.
As mentioned, HAE TrackR continues to be a great tool and is now available in 33 languages – several of which are spoken in my region (Danish, Finnish, French, German, Norwegian, and Swedish). The HAE TrackR app is easy to use – and a safe way to store your data – and it will help the patient and physician in their dialogue on current and future treatment options. I can only urge everyone to check it out – and to start using it! New functionality has recently been released, not least one to remind you to take your prophylactic treatment and an improved reporting to share your treatment data with your physician.
The HAE Companion app deserves another mention. It is available in both Apple App Store and Google Play, and truly is a great tool to use. This app will help you find local HAE treatment centers and directions hereto, as well as you will find the Emergency Cards available in more than 80 countries. You can download the Emergency Card in the local language of the country you are visiting to your smartphone, e.g., to Apple’s Wallet and Android’s Passbook. A great help when you are traveling to a country to have the Emergency Cards ready in the local languages. Or to have the Emergency Card in your own language available on your smartphone when being at home.
Also, we are working towards the 2023 HAEi Regional Conference EMEA taking place in Munich, Germany, 1-3 September. This conference is intended for patients and caregivers in the European, Middle Eastern, and African regions, and it will be great to gather patients and caregivers from so many countries again.
During the months of April and May, we were once again celebrating the hae day :-) awareness day. It has been exciting to see all the fun activities patients, caregivers, and others have carried out to track their ‘steps’ on haeday.org.
